“It Has Greatly Impacted Me”: Foregrounding the Experience of Caregivers of Autistic Children

• In Event: Research in Progress Roundtable Session 3
  In Invited Roundtable: Perspectives on Parental Engagement in Elementary and Secondary Education (Table 3)

Abstract

In this qualitative study, I address the paucity of knowledge about the support needs and well-being of caregivers of autistic children. Such caregiving is generally accepted to be a complex and challenging lifelong experience, yet research is predominantly focused on child outcomes. To center caregivers’ voices, I am engaged in exploration of their lived experience of caring for autistic children. Through preliminary analysis, four themes emerged: 1) understanding autism, 2) cognitive appraisal, 3) emotional labor, and 4) the role of supports. These themes offer a lens through which to understand the nuanced experiences of caregivers managing the immense responsibility of caring for autistic children. With this increased understanding, I aim to inform adult-centered interventions that support the well-being of caregivers.

Author

• Jaime Lewandowski, Oklahoma State University